Hi,
Just thought I'd ask if any of you have ever been on Actonel to cause calcium to absorb into your bones.
Just got some metabolic and other profiles done, but unrelated to that, my endo got the bone density results faxed over that I had done before Christmas, and thought that I needed to do some fracture prevention with the Osteoporosis and all.
Kinda think I've been on the mend over the last couple of years off of gluten, but since the bone density just measured one point in time, it couldn't show any progress that had already been made.
Anyway, think I need to hurry along the process, so guess will take this stuff, at last til the follow-up scan.
First, endo wants to do a urine test to see how fast my bone cells are turning over.
Then, we'll see what he says about those results.
Yours, Luce
Actonel to build up my bones
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barbaranoela
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- Posts: 5394
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Luce----I cannot take ACTONEL----causes me esophogeal spasm matter of fact I have issues with all of that stuff---And that *pain* I dont need--
Im now going to try the new one out--Boniva--I believe--
Once a month pill!!!
So LUCE---I have 3 0r 4 boxes of Actonel left----
If U would like them send me your address in PM and I will gladly ship them to U--
Hate to throw them out--
good day to U
Barbara
Im now going to try the new one out--Boniva--I believe--
Once a month pill!!!
So LUCE---I have 3 0r 4 boxes of Actonel left----
If U would like them send me your address in PM and I will gladly ship them to U--
Hate to throw them out--
good day to U
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Thanks, Barbara.
Still haven't looked up the ingredients of the Actonel. Sure hope there's nothing inside of those that I react to. If so, will have to check see if a compound pharmacy could make some up for me, but so far, I've been amazed the number of things that don't have fillers that I can't have. I'm not sure how many there are that act like this one does.
One of the reasons that I'm reluctant to use the ones that act in the same way as this one is because my dentist showed me some pictures of some cancer patients who were receiving this stuff IV (which of course is VERY different than my situation, and with the oral form as well.) These patients had developed terrible looking jaw abcesses, and the article included the pictures -- awful looking!
This hasn't apparently showed up with the regular patients taking the oral form, but I sure don't want to be the first one.
A broken hip MIGHT be the worse of the two evils, but I'm not sure how treatable those types of abscesses are nor how painful they are??? They've got to seriously interfere with eating, that's for sure!
My sister reminded me that thousands of patients have been taking these drugs for a while now, so it should've showed up by now with the oral form.
At least I'd probably be ok to stop it once the bones look ok after a few months of this medication since my absorption is better due to healing of my gf gut. Guess I'd be due to recheck this coming December. Sure wish I'd been taking calcium and Vit D from the git-go as that Dec. bone density might've been much better by then.
Another thing I've not done is get the appropriate kind of exercise, due to the situation here. Apparently that has lots to do with the absorption of calcium in the bones.
My sister hadn't been gf long enough when she had her bone scan, just from last June to this past December, so she was just assuming that with the supplements she's been on, hers would return to normal in about a year. I don't know whether she'll want to take the medication, but perhaps if I don't have any problems with it, she could start it, It seems as though we share lots of the same genes as evidenced by our food reactions -- test positive for exact same foods, etc.
Somehow, I just think that since we're both in our fifties. albeit 6 yrs apart, that it's going to take more than the average 12 months that it takes for celiacs to build their bones back with just the gf diet.
Will let you know, Barbara, but have a couple of things to do before the final decision to go on this stuff. One of those is to collect a voided specimen to check the rate of bone turnover, and unfortunately, I didn't get a chance to do that today.
Thanks so much! I would imagine this stuff is fairly expensive, isn't it?
Yours, Luce
Still haven't looked up the ingredients of the Actonel. Sure hope there's nothing inside of those that I react to. If so, will have to check see if a compound pharmacy could make some up for me, but so far, I've been amazed the number of things that don't have fillers that I can't have. I'm not sure how many there are that act like this one does.
One of the reasons that I'm reluctant to use the ones that act in the same way as this one is because my dentist showed me some pictures of some cancer patients who were receiving this stuff IV (which of course is VERY different than my situation, and with the oral form as well.) These patients had developed terrible looking jaw abcesses, and the article included the pictures -- awful looking!
This hasn't apparently showed up with the regular patients taking the oral form, but I sure don't want to be the first one.
A broken hip MIGHT be the worse of the two evils, but I'm not sure how treatable those types of abscesses are nor how painful they are??? They've got to seriously interfere with eating, that's for sure!
My sister reminded me that thousands of patients have been taking these drugs for a while now, so it should've showed up by now with the oral form.
At least I'd probably be ok to stop it once the bones look ok after a few months of this medication since my absorption is better due to healing of my gf gut. Guess I'd be due to recheck this coming December. Sure wish I'd been taking calcium and Vit D from the git-go as that Dec. bone density might've been much better by then.
Another thing I've not done is get the appropriate kind of exercise, due to the situation here. Apparently that has lots to do with the absorption of calcium in the bones.
My sister hadn't been gf long enough when she had her bone scan, just from last June to this past December, so she was just assuming that with the supplements she's been on, hers would return to normal in about a year. I don't know whether she'll want to take the medication, but perhaps if I don't have any problems with it, she could start it, It seems as though we share lots of the same genes as evidenced by our food reactions -- test positive for exact same foods, etc.
Somehow, I just think that since we're both in our fifties. albeit 6 yrs apart, that it's going to take more than the average 12 months that it takes for celiacs to build their bones back with just the gf diet.
Will let you know, Barbara, but have a couple of things to do before the final decision to go on this stuff. One of those is to collect a voided specimen to check the rate of bone turnover, and unfortunately, I didn't get a chance to do that today.
Thanks so much! I would imagine this stuff is fairly expensive, isn't it?
Yours, Luce
Hi Lucy,
I've been on Fosomax, and now Boniva, for a total of about 5 years. I think they are basically the same as Actonel. My diagnosis has gone from "osteoporosis" to "osteopenia" in that time, so I am certain it is working for me.
I have no side effects. I had mild heartburn before I started taking the drugs, and it is no worse.
Everyone is different - this is just my two cents worth. Most of my aunts and my mother died of complications from osteoporosis They suffered terrible crippling pain in their last years.
Good luck with your decision!
Alice
I've been on Fosomax, and now Boniva, for a total of about 5 years. I think they are basically the same as Actonel. My diagnosis has gone from "osteoporosis" to "osteopenia" in that time, so I am certain it is working for me.
I have no side effects. I had mild heartburn before I started taking the drugs, and it is no worse.
Everyone is different - this is just my two cents worth. Most of my aunts and my mother died of complications from osteoporosis They suffered terrible crippling pain in their last years.
Good luck with your decision!
Alice
Yes, the complications of osteoporosis are definitely one of the biggest risks I could possibly take.
Alice, how often do you recheck your bone density? It sounds as though it takes a long time on the medication, even to build the bones back to the osteopenia level, at least that was the case with you.
Should your bone density ever get to the point that your bones are normal, would you then consider a trial off the medication?
My thinking here is that if your gut and therefore absorption has returned to normal, and you are getting the appropriate amounts of calcium and Vit D, etc., that you wouldn't return to the osteoporosis state that you were in from maladsorbing. Do you think this is a possibility with you?
I suppose that the only way you'd know it was working would be to repeat the bone density again at the end of a year or so after being back off the medication. Would it be dangerous to keep repeating the bone densities that often, do you think? I guess people get much more radiation than that in a year with no problems, but still, it's something I'd have to take into consideration.
Thanks for your inputs, Barbara and Alice!
Yours, Luce
Alice, how often do you recheck your bone density? It sounds as though it takes a long time on the medication, even to build the bones back to the osteopenia level, at least that was the case with you.
Should your bone density ever get to the point that your bones are normal, would you then consider a trial off the medication?
My thinking here is that if your gut and therefore absorption has returned to normal, and you are getting the appropriate amounts of calcium and Vit D, etc., that you wouldn't return to the osteoporosis state that you were in from maladsorbing. Do you think this is a possibility with you?
I suppose that the only way you'd know it was working would be to repeat the bone density again at the end of a year or so after being back off the medication. Would it be dangerous to keep repeating the bone densities that often, do you think? I guess people get much more radiation than that in a year with no problems, but still, it's something I'd have to take into consideration.
Thanks for your inputs, Barbara and Alice!
Yours, Luce
Luce,
I get the Dexa-scan of back and hips every two years. The progress is slow, but sure.
I'm not sure what I'd do if my density returned to normal. I'd be very surprised! I think heredity plays huge role in my case; not sure how much malabsorption figures into the equation.
How could one determine the extent of bone loss due to malabsorption? I have all the risk factors for osteo except I never smoked.
Best always,
Alice
I get the Dexa-scan of back and hips every two years. The progress is slow, but sure.
I'm not sure what I'd do if my density returned to normal. I'd be very surprised! I think heredity plays huge role in my case; not sure how much malabsorption figures into the equation.
How could one determine the extent of bone loss due to malabsorption? I have all the risk factors for osteo except I never smoked.
Best always,
Alice
Hi Alice,
Took me a long time to get back here when I'm awake. Warm weather has me yonking off after dinner and when it's dark, and it's not from not getting enough sleep as both Mom and I have been sleeping straight through the last couple of days. Hmm, must be spring fever. Ya think spring fever is another AI disease?? Ha!
Actually, I guess one would just have to assume from some sort of malabsorption test, like the fecal fat score, for instance, that if there's any excess fat in the stool, that some of the fat soluble nutrients would be heading "out the back door," so to speak.
However, it would still be possible to know how much Vit D was present by testing the amounts of Vit D in forms, 1, 25 and 25(OH) in the serum.
Also, you can check for the amount of parathyroid hormone circulating which should enable you to know whether the liver has found it unnecessary to produce it's Vit D, due to their been plenty available in the serum already.
Alice, what source of Calcium/Magnesium are you using, and are you taking any Boron or other measures which are supposed to be good for, or at least not harmful, to the bones?
I found a site recently that gives lots of information about things like this, although I can't verify the source, and it's a little dated in terms of the estrogen-by-itself studies which more recently have become public (very different from the ones with estrogen AND progesterone.) If you like, I could forward it to Wayne, and perhaps he'd post it for you or PM you with it. I don't know how much, if any help it would be, and of course, can't verify the sources, but they look pretty good, except for the differences in terms of progesterone. I don't quite know what to think of that part in his text, if I'm remembering that from the same website.
It's a bit long, but chocked full of information.
Also, what is your exercise routine like? Sure hope it's not like mine!!
Yours, Luce
Took me a long time to get back here when I'm awake. Warm weather has me yonking off after dinner and when it's dark, and it's not from not getting enough sleep as both Mom and I have been sleeping straight through the last couple of days. Hmm, must be spring fever. Ya think spring fever is another AI disease?? Ha!
Actually, I guess one would just have to assume from some sort of malabsorption test, like the fecal fat score, for instance, that if there's any excess fat in the stool, that some of the fat soluble nutrients would be heading "out the back door," so to speak.
However, it would still be possible to know how much Vit D was present by testing the amounts of Vit D in forms, 1, 25 and 25(OH) in the serum.
Also, you can check for the amount of parathyroid hormone circulating which should enable you to know whether the liver has found it unnecessary to produce it's Vit D, due to their been plenty available in the serum already.
Alice, what source of Calcium/Magnesium are you using, and are you taking any Boron or other measures which are supposed to be good for, or at least not harmful, to the bones?
I found a site recently that gives lots of information about things like this, although I can't verify the source, and it's a little dated in terms of the estrogen-by-itself studies which more recently have become public (very different from the ones with estrogen AND progesterone.) If you like, I could forward it to Wayne, and perhaps he'd post it for you or PM you with it. I don't know how much, if any help it would be, and of course, can't verify the sources, but they look pretty good, except for the differences in terms of progesterone. I don't quite know what to think of that part in his text, if I'm remembering that from the same website.
It's a bit long, but chocked full of information.
Also, what is your exercise routine like? Sure hope it's not like mine!!
Yours, Luce
Hi Lucy,
You are a very busy lady and I don't know how you find the time to chat here, but I'm glad you do!
To answer your questions - I walk about 3 times a week for 1/2 hour each time, and do yoga a couple times a week. So my exercise isn't great, but better than nothing.
I take a calcium/magnesium supplement (1,000/500) everyday and get alot of dietary calcium. I take a multi-vitamin with D.
Have done all this for years and still ended up with thin bones! Let me know what you decide to do. Thanks for the tips about serum levels.
I haven't taken progesterone since my total hysterectomy, just estrogen.
Alice
You are a very busy lady and I don't know how you find the time to chat here, but I'm glad you do!
To answer your questions - I walk about 3 times a week for 1/2 hour each time, and do yoga a couple times a week. So my exercise isn't great, but better than nothing.
I take a calcium/magnesium supplement (1,000/500) everyday and get alot of dietary calcium. I take a multi-vitamin with D.
Have done all this for years and still ended up with thin bones! Let me know what you decide to do. Thanks for the tips about serum levels.
I haven't taken progesterone since my total hysterectomy, just estrogen.
Alice
Alice,
Have you been hearing about the D3 or cholesomething form of vit D lately in the news? It's more readily available to the bones for absorption, I believe, than the ergosomething form or D2.
Hope your Calcium/Magnesium has the minerals in it as my hypoallergenic liquid one doesn't have those things. Calcitrate Plus is what my endo really wants me to take, so sometimes chew one of those til they are small enough that I can swallow the pieces.
By the way, it appears that Mom's also got the beginning of Alzheimer's in addition to the Parkinson's. She's got Lewy Body disease according to the big doc who comes in at the very end of the exam by the Fellow studying under him. He didn't use the diagnosis of Multiple Systems Atrophy/Shy Dragers, but she's definitely got the autonomic issues to go with that as well.
Too sleepy to write -- keep falling asleep, so will close. Take care of those bones, ok?
Yours, Luce
Have you been hearing about the D3 or cholesomething form of vit D lately in the news? It's more readily available to the bones for absorption, I believe, than the ergosomething form or D2.
Hope your Calcium/Magnesium has the minerals in it as my hypoallergenic liquid one doesn't have those things. Calcitrate Plus is what my endo really wants me to take, so sometimes chew one of those til they are small enough that I can swallow the pieces.
By the way, it appears that Mom's also got the beginning of Alzheimer's in addition to the Parkinson's. She's got Lewy Body disease according to the big doc who comes in at the very end of the exam by the Fellow studying under him. He didn't use the diagnosis of Multiple Systems Atrophy/Shy Dragers, but she's definitely got the autonomic issues to go with that as well.
Too sleepy to write -- keep falling asleep, so will close. Take care of those bones, ok?
Yours, Luce
Hi Alice,
Endo called back today, and apparently, he didn't realize that I was still on the Alora estrogen patch, so that made him feel better about my not taking another bone building medication as long as I'm on that, and of course, being more faithful about the calcium, vit D, and other minerals, and hopefully, appropriate exercise for building bones. He again said that I didn't need more calcium, but did need more Vit D, from the profiles that were done on my blood at the lab.
One thing he mentioned was that those numbers that they state about one's increased chances of breaking a bone with such-and-such numbers of standard deviations on one's bone density scores really apply to much older people, so that at my age, and the slowness of the progression of this condition, he saw no problem with my waiting until around Christmas time to repeat the bone density, just so that I can perhaps pick up on which direction the bones are going. If the density is improving, albeit a very small amount, then I'll know that what I'm doing is going to work eventually. I just hope that December won't be too soon to repeat it. Perhaps I should wait til May of 2007 or so, just to make sure that I've been taking enough of everything.
One other area of neglect is that I haven't been replacing my patch on time. I'm supposed to use two a week, and sometimes don't change one for, I'll bet, a whole week. It's amazing that I don't get more hot flashes than I do! Well, sometimes I do recognize them, and change that patch earlier, but I'm by no means regular, but that's got to change, and soon.
Anyway, there's more to bone health than bone density, but we certainly don't want to go into our last decades when we're more vulnerable with thin bones, that's for sure.
Oh, and I asked the doc about the oral meds for building bones, and the jaw problems that our dentist had shown me pictures of. Apparently there are some who've had the problems on the oral form, if I understood him correctly, but he gave me the impression that these were very ill, very elderly patients with already very fragile bones and general conditions, so I don't know whether alot can be made of that for people our age and condition.
Anyway, he didn't think I'd have any problem with Actonel or Fosamax, for that matter. I think he said the Actonel was shown by some study to be a bit better at doing what we want it to do, but I can't remember the exact parameters he was using..shucks! Sometimes I think my mom's memory is better than mine! Other times, I KNOW it is.
He didn't have anything nice to say about Pro vera, by the way. I forget how we got off on that topic, but we love to discuss research projects whenever we talk.
Of course, I have no need for progesterone anyway, but apparently there's something about Pro vera that makes it a problem.
He said he's got a form of progesterone that he likes to use in some patients who need it which doesn't have this alteration in it's structure. It is the alteration which he says isn't a good thing, and it's also probably the reason that research has shown that the estrogen/progesterone (wasn't it using Pro vera?) combo, rather
than estrogen alone showed up with increased breast cancers?
I knew that with the estrogen patch, there was only one pass through the liver, whereas with the oral forms, there were two passes through the liver, but today, I learned that the effect on the liver with the patch is only a tiny fraction of that of the oral form's other pass through the liver. This makes me feel particularly good, since I knew that that one pass was still going through my liver!
Wow, sometimes I think we need another support group just to cheer us on to keep up with our supplements! I suppose that with your family history, that is all you need to keep the bone routine close to consciousness. I sure hope that the estrogen taken more faithfully, and a little boost in the Vit D will get me to that place, and soon.
As soon as I get the requisition in the mail, I'm going to take a second voided urine specimen over to the lab to see if my bone cells are turning over like they're supposed to.
Always something to be concerned about, isn't there? I don't ever remember worrying about my health when I was younger...not EVER! Will let you know what that produces, and might even make a list of questions for the endo next time he calls.
Guess I'd better read up on bone physiology before his office calls with the " bone turnover" results. I'll be as interested in the science part of it as I am the results, I think, but then I'm an optomist until I here differently.
Take care!
Yours, Luce
Endo called back today, and apparently, he didn't realize that I was still on the Alora estrogen patch, so that made him feel better about my not taking another bone building medication as long as I'm on that, and of course, being more faithful about the calcium, vit D, and other minerals, and hopefully, appropriate exercise for building bones. He again said that I didn't need more calcium, but did need more Vit D, from the profiles that were done on my blood at the lab.
One thing he mentioned was that those numbers that they state about one's increased chances of breaking a bone with such-and-such numbers of standard deviations on one's bone density scores really apply to much older people, so that at my age, and the slowness of the progression of this condition, he saw no problem with my waiting until around Christmas time to repeat the bone density, just so that I can perhaps pick up on which direction the bones are going. If the density is improving, albeit a very small amount, then I'll know that what I'm doing is going to work eventually. I just hope that December won't be too soon to repeat it. Perhaps I should wait til May of 2007 or so, just to make sure that I've been taking enough of everything.
One other area of neglect is that I haven't been replacing my patch on time. I'm supposed to use two a week, and sometimes don't change one for, I'll bet, a whole week. It's amazing that I don't get more hot flashes than I do! Well, sometimes I do recognize them, and change that patch earlier, but I'm by no means regular, but that's got to change, and soon.
Anyway, there's more to bone health than bone density, but we certainly don't want to go into our last decades when we're more vulnerable with thin bones, that's for sure.
Oh, and I asked the doc about the oral meds for building bones, and the jaw problems that our dentist had shown me pictures of. Apparently there are some who've had the problems on the oral form, if I understood him correctly, but he gave me the impression that these were very ill, very elderly patients with already very fragile bones and general conditions, so I don't know whether alot can be made of that for people our age and condition.
Anyway, he didn't think I'd have any problem with Actonel or Fosamax, for that matter. I think he said the Actonel was shown by some study to be a bit better at doing what we want it to do, but I can't remember the exact parameters he was using..shucks! Sometimes I think my mom's memory is better than mine! Other times, I KNOW it is.
He didn't have anything nice to say about Pro vera, by the way. I forget how we got off on that topic, but we love to discuss research projects whenever we talk.
Of course, I have no need for progesterone anyway, but apparently there's something about Pro vera that makes it a problem.
He said he's got a form of progesterone that he likes to use in some patients who need it which doesn't have this alteration in it's structure. It is the alteration which he says isn't a good thing, and it's also probably the reason that research has shown that the estrogen/progesterone (wasn't it using Pro vera?) combo, rather
than estrogen alone showed up with increased breast cancers?
I knew that with the estrogen patch, there was only one pass through the liver, whereas with the oral forms, there were two passes through the liver, but today, I learned that the effect on the liver with the patch is only a tiny fraction of that of the oral form's other pass through the liver. This makes me feel particularly good, since I knew that that one pass was still going through my liver!
Wow, sometimes I think we need another support group just to cheer us on to keep up with our supplements! I suppose that with your family history, that is all you need to keep the bone routine close to consciousness. I sure hope that the estrogen taken more faithfully, and a little boost in the Vit D will get me to that place, and soon.
As soon as I get the requisition in the mail, I'm going to take a second voided urine specimen over to the lab to see if my bone cells are turning over like they're supposed to.
Always something to be concerned about, isn't there? I don't ever remember worrying about my health when I was younger...not EVER! Will let you know what that produces, and might even make a list of questions for the endo next time he calls.
Guess I'd better read up on bone physiology before his office calls with the " bone turnover" results. I'll be as interested in the science part of it as I am the results, I think, but then I'm an optomist until I here differently.
Take care!
Yours, Luce
Hi Lucy,
It's interesting to compare our "bone strategies"!
Here's mine:
Vivelle patch .025 (actually taking for other menopausal symptoms, may help bone? )
calcium/magnesium
vit. D
weight- bearing exercise
dietary calcium
Boniva
Did I forget anything? It seems a menopause support group would be helpful - you're right!
After watching my mom and her sisters suffer from extreme osteo and the complications, I'm being very aggressive.
I'll let you know what my test next week shows.
I'm sorry to hear about your Mom's Alz. dx. Another cause for concern
to add to the list. You must feel overwhelmed.
Take care,
Alice
It's interesting to compare our "bone strategies"!
Here's mine:
Vivelle patch .025 (actually taking for other menopausal symptoms, may help bone? )
calcium/magnesium
vit. D
weight- bearing exercise
dietary calcium
Boniva
Did I forget anything? It seems a menopause support group would be helpful - you're right!
After watching my mom and her sisters suffer from extreme osteo and the complications, I'm being very aggressive.
I'll let you know what my test next week shows.
I'm sorry to hear about your Mom's Alz. dx. Another cause for concern
to add to the list. You must feel overwhelmed.
Take care,
Alice
I just read an article that said none of the supplements really help much it is more diet all along in your life and genetics. The pills really tear up my stomach.
I get the bone density test every year and there is gradually more loss. f it gets too bad I might try the shots.. but not in a hurry to add anything at the moment...
I go to the gym almost every day... walk 20-30 min and do several machines (total 50 min). As long as I can do that.. I will try not to worry much about bone loss:)
grannyh
I get the bone density test every year and there is gradually more loss. f it gets too bad I might try the shots.. but not in a hurry to add anything at the moment...
I go to the gym almost every day... walk 20-30 min and do several machines (total 50 min). As long as I can do that.. I will try not to worry much about bone loss:)
grannyh
Hi there, grannyh,
Glad to see you didn't blow away in that recent storm that went through northwest of Houston! Did you have much wind? (Didn't mean that the way it sounded! Ha!)
Grannyh, with all the discussion about stopping your D, I somehow don't remember the answer to this, but are you to the level of
osteopenia or do you already have some osteoporosis? I figure it must be the latter for you to be repeating those bone densities once a year. I guess in your case, you're doing damage control in holding the bone loss down to a minimum, right?
I feel better when people remind me about what I ate, and how I exercised growing up because I was quite active during those years, so I hope that that is contributing something to my bone strength right now. In a way, my condition is genetic because of the malabsorption of fat in the small bowel from the gluten sensitivity damage, and therefore, the difficulty of absorbing enough Vit D which is a fat soluble vitamin for so many years. I wonder if any other genes have been found which contribute to the problem? Would be surprized if there weren't any more of them. Perhaps I will have time to do some research on genes and osteoporosis at some time in the future, just to see what I can turn up.
Alice, while we were talking, the endo mentioned a patch he particularly likes that started with a "V," so perhaps that was it. Will have to ask my sister if there are any others that start with that same letter. I wonder if the adhesive would irritate my skin?
Also, I read a description on a Pick's Disease site that listed characteristics of a bunch of different dementias, and the one on Lewy Body fit my mom to a "t." I had done a search on Lewy Body, and liked the paragraph under that title. Otherwise, I would've never looked at a Pick's site.
Did either of your parents have Lewy Body?
There's a PD form of it which appears to be what Mom has.
Did I mention that we are contemplating letting her start the Exelon that has been suggested? It's particularly difficult in terms of possibly causing nausea and extreme vomiting, but I think one can adapt to it in time. Also, we got a script for a medication to combat the nausea, so guess I need to send off for that so I'll have it on hand, just in case.
Tomorrow I'm taking Mom to a friend's house to meet with some other ladies, so I'm taking along a plate for each of us to nuke for our lunch. What the hostess was fixing can be made from scratch though, so I'll try to get a recipe if it's at all adaptable for the dairy-free, egg-free part. Thing is that the hostess has the canned soups to use instead, so we figured this would be easiest.
This lady is so understanding, and her hubby recently had something that they thought was food allergies, but it turned out that his was related to a medication he'd been taking.
She's a really nice person anyway.
Mom seems to be really looking forward to seeing these people, so I hope that the ones who are coming are the ones she knew from her active day. At any rate, she'll enjoy seeing the hostess and her hubby again as she's one of Mom's favs.
Yours, Luce
Glad to see you didn't blow away in that recent storm that went through northwest of Houston! Did you have much wind? (Didn't mean that the way it sounded! Ha!)
Grannyh, with all the discussion about stopping your D, I somehow don't remember the answer to this, but are you to the level of
osteopenia or do you already have some osteoporosis? I figure it must be the latter for you to be repeating those bone densities once a year. I guess in your case, you're doing damage control in holding the bone loss down to a minimum, right?
I feel better when people remind me about what I ate, and how I exercised growing up because I was quite active during those years, so I hope that that is contributing something to my bone strength right now. In a way, my condition is genetic because of the malabsorption of fat in the small bowel from the gluten sensitivity damage, and therefore, the difficulty of absorbing enough Vit D which is a fat soluble vitamin for so many years. I wonder if any other genes have been found which contribute to the problem? Would be surprized if there weren't any more of them. Perhaps I will have time to do some research on genes and osteoporosis at some time in the future, just to see what I can turn up.
Alice, while we were talking, the endo mentioned a patch he particularly likes that started with a "V," so perhaps that was it. Will have to ask my sister if there are any others that start with that same letter. I wonder if the adhesive would irritate my skin?
Also, I read a description on a Pick's Disease site that listed characteristics of a bunch of different dementias, and the one on Lewy Body fit my mom to a "t." I had done a search on Lewy Body, and liked the paragraph under that title. Otherwise, I would've never looked at a Pick's site.
Did either of your parents have Lewy Body?
There's a PD form of it which appears to be what Mom has.
Did I mention that we are contemplating letting her start the Exelon that has been suggested? It's particularly difficult in terms of possibly causing nausea and extreme vomiting, but I think one can adapt to it in time. Also, we got a script for a medication to combat the nausea, so guess I need to send off for that so I'll have it on hand, just in case.
Tomorrow I'm taking Mom to a friend's house to meet with some other ladies, so I'm taking along a plate for each of us to nuke for our lunch. What the hostess was fixing can be made from scratch though, so I'll try to get a recipe if it's at all adaptable for the dairy-free, egg-free part. Thing is that the hostess has the canned soups to use instead, so we figured this would be easiest.
This lady is so understanding, and her hubby recently had something that they thought was food allergies, but it turned out that his was related to a medication he'd been taking.
She's a really nice person anyway.
Mom seems to be really looking forward to seeing these people, so I hope that the ones who are coming are the ones she knew from her active day. At any rate, she'll enjoy seeing the hostess and her hubby again as she's one of Mom's favs.
Yours, Luce
Hi Luce,
I've never heard of Lewy Body or Pick's before. I'll have to look them up. My mom had no dementia, just my dad. Mom was sharp until the end, which made it difficult because she got anxious and depressed over dad's condition.
I feel that the estrogen and calcium that I've been taking for years really did very little to prevent my osteoporosis. In other words, I took the stuff and got it anyway.
Heredity wins.
Sounds like a very nice party you're going to - what a treat for you and mom. It's wonderful to have friends who understand our dietary needs!
Exelon sounds familiar - think dad may have taken it at one point.
Granny, I've read about those studies also, and based on my own experience, think it's true.
Take care,
Alice
I've never heard of Lewy Body or Pick's before. I'll have to look them up. My mom had no dementia, just my dad. Mom was sharp until the end, which made it difficult because she got anxious and depressed over dad's condition.
I feel that the estrogen and calcium that I've been taking for years really did very little to prevent my osteoporosis. In other words, I took the stuff and got it anyway.
Heredity wins.Sounds like a very nice party you're going to - what a treat for you and mom. It's wonderful to have friends who understand our dietary needs!
Exelon sounds familiar - think dad may have taken it at one point.
Granny, I've read about those studies also, and based on my own experience, think it's true.
Take care,
Alice